Q&A: Your Mindset After Treatment Ends
In the world of cancer care, resources for what to expect before and during treatment are abundant. For life after treatment ends, patents too often feel like they’re on their own.
For a better understanding of this information gap, Bad Mammaries turned to Cheryl Fisher, PhD, NCC, LCPC, a counselor based in Annapolis, MD. She has 30-plus years experience in practice and a particular interest in helping premenopausal women with breast cancer. She and her daughter, a nurse oncologist, have performed research on the experiences of those women, covering everything from sexual health to their mental needs during and after treatment.
Dr. Fisher sat down with Marissa Lanzito of Bad Mammaries for the following conversation — and a healthy dose of reality about what happens after treatment ends.
Marissa Lanzito: Let’s talk about the mindset when treatment ends. I’ve always described it as, “What am I supposed to do now?”
Dr. Fisher: It really is. And it’s interesting that the professionals don’t always get that, that when they're blowing whistles and bringing in cupcakes on the last day of treatment, their patients are thinking, “Wait, I’m gonna see you next week, right?” But the answer is, “No, we don’t have to see you for three months.”
Well, that’s really frightening after you’ve been through such a scheduled, detailed experience. And I didn’t have to go through that. I’ve had a breast cancer scare but never had to go through treatment. But working with clients and doing the research that I do, it’s a theme. It comes up every time, and I still am amazed at how clinical offices just aren’t aware of it. There’s such a void in the resources.
Marissa: So how do you advise patients? What do you tell them about what’s next after you walk out of that hospital and they say, “You're done.” And you’re thinking, “It’s just beginning.”
Dr. Fisher: Well, that is exactly right. Marissa. The end of treatment is just the beginning of you reconnecting with your life, your new chapter. You have now had this chapter of breast cancer and treatment. And basically people were telling you what you needed to do. You were just kind of going through the motions of day one, day, two day three, right? So when it’s over and they tell you, “You’re good. We'll see you in a few months,” it’s upsetting. And there’s little guidance for a new chapter.
Marissa: I remember right when I finished treatment, I was like, “My eyelash hurts. I probably have eyelash cancer.” If the anxiety of it is that horrific, it just ruins your day. It ruins everything.
Dr. Fisher: Some of it’s because you don't have those checkpoints anymore, you know, you don’t have that constant reassurance. And so the first thing I do is normalize it. Validate it. Accept that this is very normal because you have been in this state of shock and awe, and you have been a medical object.
You’re not really going back. You’re reconstructing. And that reconstruction is not only your relationship with yourself, but your relationship with everyone around you. Friendships may have been weird. You’ve either had those friends who’ve been right there with you or the friends are like, really freaked out about it. Some may only identify you with breast cancer — like all of a sudden, you are our breast cancer poster child.
Marissa: And that’s the last thing you want to be.
Dr. Fisher: Right. One person, she said for her 35th birthday, she was really excited. She had finished treatment and there was no evidence of disease at this point. Her friend says, “Let’s take you away. Let’s go to do a girls’ weekend at the beach to celebrate.” And she was so happy. It felt like she was easing up a little bit and engaging in friendship.
“You’re not really going back. You’re reconstructing. And that reconstruction is not only your relationship with yourself, but your relationship with everyone around you.”
Well, wouldn’t you know it, they bring out her birthday cake with a pink ribbon all over it. Well, we know from our research that the pink ribbon model really is not for everyone.
So much of it is trying to negotiate, how do I reenter my life being informed by this experience, but not being identified by this experience?
Marissa: Is some of this tied to the myth that you’re trying to get back to what life was? Because in my experience, that’s not true.
Dr. Fisher: Absolutely. And some of that feeling is physical, because it feels like it’s not your body anymore. So now you not only have to get accustomed to your body and the changes from cancer and treatment, but in the case of mastectomy and reconstruction, you’ve got some additions that don’t feel like you. Normalizing that reaction is important. And people need to know they can seek counseling and support when they feel like that.
But even a mental shift — from you and the people around you — can help. People need to realize you’re not “jumping back in.” You’re recreating.
Marissa: Tell me more about what you’ve learned about the “pink ribbon model.”
Dr. Fisher: Well, in our research, the pink ribbon model just doesn’t work for a lot of people. Sometimes people just want to be real and drop the sugarcoating. It’s not a blessing. It’s not pink and fluffy. It’s not “free the tatas” slogans. For a lot of women — and I think you're one — being real and blunt resonates much better.
Some people resonate with dropping F-bombs. What else really captures their frustrations and anxiety?
Marissa: Well, the F-bomb is just such a great word, isn’t it? But I think a lot of this is about other people’s reactions, too. I went to this spin class. I was still bald, not wearing a wig. The instructor was up in everyone’s face, trying to be motivational. But when she got to me, she said, “If you need to take a break or if you need to slow down, you have my permission.” She was trying to be kind. I know that. But I wanted to punch her in the face and leave the room. She just had no idea how to talk to me.
Dr. Fisher: You’re getting at something crucial here, which is education. We’ve talked about the counseling of the person who has just finished treatment and is kind of in this head space. But what about the people around you? What is missing from that end of treatment milestone right now? What is missing for family and friends, but also for doctors and nurse practitioners? Like what should they be doing differently other than just saying, “See you in six weeks.”
For one thing, I think in preparation for that last day, or right before it, actually having both the patient and close family sit down and talk through the future with either the doctors or the social worker or the navigation nurse is a good place to start. I think there’s a communication gap there, both for patients and their families and for doctors.
Marissa: Who fixes that gap?
Dr. Fisher: It’s a tough question. I get that for the medical team, the end of treatment seems like the end of the job, but there needs to be a continuum of care. They may not be the ones providing what comes next, but at least they can gather and point you to resources.
Because of our research together, my daughter often starts preparing her patients before the end of treatment, making sure they have a support system. So she’ll ask, “Who are you gonna talk to?” Or she’ll suggest a counselor and some tips for preparing for the end of treatment.
You’ve mentioned that big binder you were given with everything about your cancer and treatment. Well, at the end, why not have the same thing for after treatment: Here are your resources, your next appointments — even if they’re a long way off. Here’s the short-term and long term changes to watch out for.
It’s a gap right now. I think it’s part of what you’re trying to recognize and fix with this website, which is part of your own healing.
Marissa: What’s the number one thing people can do to ease their anxiety after treatment?
Dr. Fisher: Well, it sounds simple, but normalizing these experiences is key. Just realize that what you’re going through is normal and common.
And seek support when you need it, whether that’s through a counselor, though a group setting or just through people you trust.
